TJ's Journey: Built on Love

05/31/2026

The end of May marks six months on the trial medication that is changing TJ’s life. 💙

The journey hasn’t been without challenges. The medication has significantly lowered his immune system, leading to additional medications, more monitoring, and plenty of unknowns along the way.

But despite those hurdles, we continue to see growth that makes it all worthwhile. His language and vocabulary have expanded, his memory and recall have improved, and we’re seeing progress that gives us so much hope.

We know there is still a long road ahead, but today we’re celebrating six months of progress and the possibility that comes with it. We’re grateful for every milestone, every gain, and every day we get to watch TJ thrive.

05/27/2026

We officially made it to summer break ☀️

At the same time, we’ve also started settling into TJ’s new medication routine. Over the next few weeks, we’ll be layering in four additional medications to help protect his body and immune system while his T-cell counts remain so low. The picture I’m sharing tonight doesn’t even include all of them yet, since we’re having to stagger the starts. This is his evening routine, with a different variation for the morning.

It’s a lot for such a little body. And honestly, sometimes it’s a lot emotionally too- keeping track of medications, timing, side effects, labs, and all the “what ifs” that come with trying to protect him as best we can.

But TJ continues to handle it all with so much strength and trust. No complaining, no fear- just his usual happy self taking it one step at a time.

He is such a trooper, and we are so proud of him. 💙

05/21/2026

The last week of school is bringing all the celebrations over here 🎉☀️

Today both TJ and his sister Nora had their class celebrations and were recognized for all of their hard work this year. We are so proud of how much they’ve both learned and grown.

One of TJ’s favorite moments was getting to participate in the school water balloon showdown for having the highest reading growth in his class- which was such a fun and special accomplishment for him!

It’s been a really great year for both of them, filled with learning, friendships, confidence, and so many milestones along the way.

So proud of these two and all they’ve accomplished this year. 💙📚

05/16/2026

Last week we had the opportunity to connect in one space with TJ’s medical team from different hospitals and states. Having everyone together, working collaboratively to create a plan centered around TJ’s wellbeing, was such a gift and a huge encouragement to us as parents.

The days ahead for TJ will include a few additional medications and more monitoring as his team works proactively to protect his immune system while he continues the treatment helping him thrive.

There are still unknowns to navigate, but through it all, life keeps moving forward- and TJ is as happy as ever.

He wrapped up another great season of Miracle League baseball last night, and danced his heart out with Special Olympics Iredell County and Statesville Dance and Performing Arts this morning. Watching him continue to find joy in the middle of all of this is such a gift.

So thankful for the team surrounding him, and even more thankful for the bright, resilient little boy at the center of it all. 💙

05/13/2026

One of the most beautiful parts of TJ’s journey has been the team of people helping care for him. It has taken years of praying, searching, and advocating to get here, but we are so thankful for the doctors surrounding him now.

Tomorrow we’ll have a joint meeting locally with our pediatrician, the lead leukodystrophy doctor at Children's Hospital of Philadelphia, and the immunologist in Durham. Together, they’ve been working behind the scenes to create a plan that supports TJ’s immune system and overall health, while also allowing him to continue the trial medication that is helping him thrive physically and mentally.

So much of this journey happens quietly- in research, phone calls, labs, meetings, decisions, and constant problem solving. It’s work being done by an incredible care team, but also work we carry daily as a family navigating the unknowns that rare disease brings.

We would love your prayers as we meet tomorrow afternoon, for wisdom, clarity, unity, and a plan that continues to move TJ safely forward 💙

05/09/2026

05/09/2026

Spring has been good to TJ this week 🌸🦋☀️

From releasing butterflies, to helping make strawberry jam, to an Olympic-themed field day at school, it’s been a week full of fun, learning, and so many smiles.

He also got to play another Miracle League baseball game and met a great new Buddy from the High Point Rockers Baseball team- one more sweet friendship added to the list!

Watching him soak up these moments and enjoy all the little things that make childhood special means everything to us.

Busy week. Happy boy. Full hearts. 🤍

05/06/2026

Field Day fun for TJ today! 🥈

His class had an Olympic-themed day full of activities- an obstacle course, basketball, and one of his favorites…being pulled on a quilt by an awesome group of dads (the smiles said it all!).

His class came home with the silver medal! We’re so thankful for days like this where he gets to be part of it all and just have fun with his friends. 🤍

05/02/2026

We got to take TJ to see one of his very favorite people-Handyman Hal in Charlotte, and it was everything we hoped it would be. Watching him light up, dance along, and fully enjoy every moment was the best part of our night.

Tools, tractors, fire trucks, dinosaurs, the car wash…basically all of TJ’s favorite things in one place, and he loved every second!
Moments like this mean so much to us- getting to see him have fun, be carefree, and just be a kid. Making memories, soaking it all in, and holding onto the joy 🦖🚜🔥🧰💙

04/25/2026

TJ had such a fun week at school celebrating Earth Day!

His class learned all about construction and how we can care for the earth. They even wore little construction vests- which made it extra special, and got a visit from TJ’s dad with Tim Johnson Landscaping Inc.!

He brought a Carolina Cat skid steer and shared how his work helps take care of the earth through soil care, irrigation, erosion prevention, and long-term sustainability. It was so meaningful to see the kids learning, asking questions, and making those real-life connections.

Moments like these are so special, watching TJ learn, participate, and just be a kid alongside his classmates.

Grateful for teachers who create experiences like this and make learning come to life. 🌎🚧🤍